Today, on March 4, World Obesity Day, we explore an important health connection that affects millions worldwide. For those living with familial hypercholesterolaemia (FH) – a genetic condition causing high LDL cholesterol – emerging research offers new insights into how weight affects their heart health.
People with FH often focus primarily on their LDL cholesterol levels and medication. However, recent research suggests that weight may play a more significant role in their cardiovascular outcomes than previously understood.
What the Research Shows
Dr. Amany Elshorbagy, Cardiovascular Epidemiologist at the Imperial Centre for Cardiovascular Disease Prevention, and the FH Studies Collaboration (FHSC) Investigators, examined over 35,000 patients with FH across 50 countries in the FHSC registry. Their findings, published this year in the European Heart Journal, reveal interesting patterns (see figure):
Read here the accompanying editorial highlighting these findings as a testament to the power of global registry data in advancing clinical care and policy, and advocating a more comprehensive approach to FH management—extending beyond cholesterol medication to personalised management of body weight and lifestyle. The findings are explained in a podcast by Medical Digest, and in a press article by Medscape, with commentary from other experts in the field.
What this might mean for individuals with FH
These findings suggest that for people with FH, factors beyond their genetically high LDL cholesterol may influence heart health outcomes. While cholesterol remains the primary risk driver, weight appears to be another key factor. The research indicates that when both genetic cholesterol issues and excess weight are present, they may create compounding effects on heart health.
A holistic perspective
World Obesity Day offers an opportunity to consider how weight and lifestyle interact with genetic conditions like FH. Healthcare approaches for FH have traditionally focused on cholesterol-lowering medication to prevent heart disease, but this research highlights how multiple factors might work together to determine heart disease risk in individuals with FH. This evolving understanding may lead to more personalised approaches to care.
By sharing this research, we hope to contribute to a fuller understanding of the relationship between weight and genetic cholesterol disorders. As research advances, patients and healthcare providers can have more informed conversations about the various factors influencing heart health in the context of FH.
Prepared by: Dr. Amany Elshorbagy, Cardiovascular Epidemiologist
Imperial Centre for Cardiovascular Disease Prevention,
FH Studies Collaboration (FHSC) Investigators
Would you be interested in getting healthy weight loss support information? At FH Europe Foundation, we are currently assessing the needs and opportunities to support people living with familial hyperlipidaemias healthy weight loss and management advice. Interested? Contact us: info@fheurope.org
Explore the highlights from FH Europe's February 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
We are delighted to welcome two new members to the FH Europe Foundation team, further strengthening our network and expertise. Their commitment and experience will contribute significantly to our mission of improving the lives of those affected by inherited lipid disorders.
Maja Bartoszewicz-Moritz Joins as Project Manager for Rare Diseases
We are pleased to introduce Maja Bartoszewicz-Moritz, who joins FH Europe Foundation as Project Manager for Rare Diseases. With over 15 years of experience as a rare disease advocate, caregiver, and patient representative, Maja brings a wealth of expertise to our team. She leverages her deep knowledge in healthcare systems across Sweden, Italy, Poland, and speaks four languages, making her well-equipped to drive meaningful change.
With a background in leadership, cross-sector collaboration, and stakeholder engagement, Maja bridges the gap between patients, caregivers, healthcare professionals, and industry leaders. Her advocacy journey became deeply personal when her daughter was diagnosed with a rare genetic condition in 2018, fueling her mission to amplify underrepresented voices and improve healthcare accessibility.
Combining a strong understanding of medical, commercial, and insurance sectors with a passion for collaboration, Maja is committed to ensuring that those affected by rare diseases receive the support and recognition they deserve. She firmly believes: "Alone, I can make an impact. Together, we can change tomorrow."
Magda Anthousi Joins as Project Manager
We also welcome Magda Anthousi to the team as EU Projects Manager. A Cypriot professional based in Limassol, Magda has a diverse background in public health, chemistry and banking. She holds a degree in Chemistry from the National and Kapodistrian University of Athens (EKPA) and began her career in the pharmaceutical industry at MEDOCHEMIE. She later spent 18 years at the National Bank of Greece (Cyprus) Ltd, where she also obtained a diploma in banking.
After leaving the banking sector, Magda pursued a master's degree in public health (CUT), with a focus on biostatistics and epidemiology. Currently, she serves as an external research associate at the Cyprus University of Technology (TEPAK), a chemistry teacher in the public education sector in Cyprus. Since December 2024, Magda has been involved in PERFECTO FH and is taking over management of PerMed FH and PF-EARLY as a Project Manager at FH Europe Foundation. Her multidisciplinary background and commitment to public health make her a valuable addition to our team.
“We are delighted to welcome Maja and Magda to our team and community. Their professional expertise, personal experiences, and dedication will help us make a significant impact in both rare disease advocacy and the delivery of EU-funded projects,” says Magdalena Daccord, CEO of FH Europe Foundation.
With these new additions, FH Europe Foundation continues to expand its impact and drive meaningful change in the field of inherited lipid disorders. We look forward to working together towards a healthier future for all affected individuals.
For patients living with Homozygous Familial Hypercholesterolaemia (HoFH) in Lebanon, access to life-saving treatment has been an ongoing challenge. Due to the country’s ongoing crises, LDL apheresis—the only available treatment for HoFH patients in Lebanon—was discontinued for a period, then resumed inconsistently. This uncertainty placed patients at high risk for premature cardiac events and severe complications.
On February 17, 2025, a pivotal meeting took place at the Presidential Office of Lebanon. Representing FH Lebanon, an informal patient support group, I, Chyrel Lichaa, FHEF HoFH Patient Ambassador, was joined by Rose Chahine and her son Marc Salloum, HoFH patient, as well as Saide Salloum, who tragically lost her son and our friend Wassim Nissi due to the lack of treatment.
Together, we met with the Advisor to the President of the Republic of Lebanon to advocate for consistent and sustainable access to LDL apheresis.
The Road to the Presidential Office
This meeting was not an isolated effort but the result of sustained advocacy. Leading up to it:
The Meeting: A 20-Minute Window to Make an Impact
Understanding the constraints of time in such high-level meetings, we planned the flow of our intervention, ensuring that each of the advocates (me, Rose, and Saide) had the chance to speak and share our personal experiences while backing them up with existing scientific evidence. For that, we liaised with FH Europe Foundation and Prof. Marianne Abi Fadel. Unsure of how the meeting might evolve (limited time, emotions, unexpected questions) we also prepared and printed support materials. Those included:
During the discussion, we addressed fundamental questions about HoFH—what it was, why treatment was essential, and how treatment frequency affected its efficacy. We also shared personal experiences, with both Marc and me providing firsthand insights into the challenges we face as people living with HoFH, alongside Saide and Wassim’s tragic story.
A Positive Response & Next Steps
Despite Lebanon’s complex and tense situation, we were met with a receptive response. The Advisor to the President assured us that our concerns would be escalated to the new Minister of Public Health and other key healthcare authorities. The commitment was clear: no patient should have to worry about where their next treatment is coming from.
As a next step, our case file will be formally discussed with the Ministry of Public Health, and a follow-up meeting will be scheduled in the coming weeks. This will provide an opportunity to delve deeper into actionable solutions for ensuring consistent treatment for all HoFH patients in Lebanon.
Hope for the Future
This meeting was a significant step in our fight for treatment access, but it is just the beginning. Advocacy requires persistence, and we remain committed to ensuring that HoFH patients in Lebanon receive the care they need and deserve.
We sincerely appreciate everyone who has supported this cause.
Our special thanks go to FH Europe Foundation for empowering us and providing essential documents and evidence to strengthen our case. We are also deeply grateful to Professor Marianne Abi Fadel, whose ongoing support, data, and direct involvement with the Ministry have been invaluable, and to Professor Samia Mora for her unwavering commitment, and to everyone who cosigned the high-level advocacy level letter: Magdalena Daccord, Prof. Dirk Blom, Prof. Khalid Al Rasadi, Prof. Børge Nordestgaard, Prof. Marianne Abi Fadel, Prof. Albert Wiegman, Prof. Samia Mora, Michelle Winokur, Maria Nassif.
And finally, to everyone who stood by us and contributed to this journey—your support is instrumental. We look forward to continuing this mission toward a future where no patient is left behind.